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SomeonesMom
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 11/12/2017 9:11 PM (GMT -6)   
Hello all,

I have been reading posts here but never posted as I had nothing to offer really until now. I've appreciated the advice and tips found here and the supportive environment. This post mostly may be helpful to those who have not yet gotten the diagnosis of SS but are exhibiting symptoms.

Firstly, it is not myself, but my daughter who has been suffering, for about 4 - 5 years, she is just turning 25. She has had severe dry eyes along with dry mouth and throat, painfully dry, and has had few full night's sleep in years from always waking in pain. Nothing she tried would give her relief for more than a few hours at most.

After all sorts of doctors and tests, there was never any conclusion to the cause, but she was told repeatedly it looked like Sjorgrens or Lupus, despite the lack of any other symptoms or indications on the blood tests of which there were many. She was encouraged to see a rheumy, yet had the toughest time getting a referral. It's a long long story all the docs, tests, and things tried, medical and natural, so for brevity's sake I will skip the whole tumultuous tale.

While waiting for the referral to the rheumy to come through, we started looking at the hormone question again more closely, despite the dismissal from the endocrinologist. It occurred to me since testosterone was successful with dry eye in older women, there could be something to the hormones, and she has a history of difficult menses and indications of PCOS. Also dry eye is common in pregnancy as well as on birth control pills. Since testosterone is so difficult to obtain for women, I thought why not try some progesterone cream, so she did. Why not indeed, she tried so many things already to no avail.

Oh my. Right away she noted an increase in saliva and was able to sleep through the night. Still needed morning eye drops but none throughout the day. This continued to improve. Now that it has been a full month, it clearly has been the solution for her. It makes perfect sense now after thinking it through, as during ovulation, the body produces moisture to hang on to the egg, and progesterone becomes the dominant hormone at this time. With just a daily dose of progesterone cream, her moisture has returned, like 95%. She was able to stop it for a week too, as it's best to try and mimic a natural cycle, and had no resurgence of dryness that week. Really it has been miraculous!

After years of suffering, including the terrible financial drain, all it took was a cheap bottle of natural progesterone cream. That not one doctor had thought to consider a hormonal cause is shocking really. The endocrinologist and the opthamologist surely should have been aware of the connection and had given it some consideration. There are some scientific studies published years ago. Really wish we'd had come upon the solution much sooner as real damage was occurring with dental issues and her meibomian glands. I will refrain from ranting, but these docs could definitely use some education so perhaps they can help the next person. This "no cause, no cure" message the doctors were expressing was just unacceptable. She was so exhausted and worn down though, she was ready to give up.

Anyway, I wanted to reach out here, as if this could help even just one person it is certainly worth mentioning. Not going to be a solution for everyone of course, many of you have the definitive diagnosis which she had not obtained at this point. All we had was the doc's best guess and they kept pointing to autoimmune. Clearly it's been hormone's all along for her and relief found sitting on a shelf at the store.

I pray for all of you here struggling with this condition and hope that you find relief. Leave no stone unturned in your journey. As they say, it's always found in the last place you look.

SomeonesMom
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 11/19/2017 9:11 PM (GMT -6)   
I just wanted to add something here - some science to show there is more evidence than just my little story of Progesterone Cream being effective for dry eye.
Also just to mention .. someone with Sjogren's diagnosis reported they too experienced increased moisture when using natural progesterone cream.
So, diagnosis or not - there is a fair chance this may help.

The Use of Progesterone Cream to Treat Dry Eye
http://iovs.arvojournals.org/article.aspx?articleid=2382585

"It is worth noting that progesterone cream was able to relieve symptoms in a larger population of dry eye sufferers than testosterone. Testosterone cream benefits are mainly limited to menopausal females."

prybar
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/19/2017 10:02 PM (GMT -6)   
I am not sure if I have Dry Mouth or Sjogren's....but this is making my life miserable. I just retired(age 66) and have been putting up with this for two years. I have lost most taste and my sense of smell is much weaker than it used to be. I get run-around from my doctor who has had me try almost everything with no help. Do you think this progesterone could help me. Do I need a prescription? This has really turned into a quality of life issue for me and I don't think the medical profession takes this disease seriously enough.

SomeonesMom
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 11/19/2017 11:00 PM (GMT -6)   
Natural progesterone cream is available over the counter at many stores here, we picked it up at Whole Foods. Always easy to purchase online too. Commonly used daily by menopausal women to relieve hot flashes.

I feel your pain.The doctors ran us around too, for years.
You could request the doc to run hormone tests if you wanted to know your levels to see for sure which hormone you are in need of. Had they tested my daughter she would have been spared years of agony.

Older women and men can often benefit from testosterone - but that requires prescription.

But yes natural progesterone cream is easily obtained, no prescription required. Quite possibly it can help you. It's not overly expensive either.

Just be sure to get a type that is natural, very important. Also paraben free.

Sorry you are suffering. This dryness is a misery. I cannot guarantee this will work for you but it sure is worth a try. If not, ask the doctor to test your hormones or prescribe a testosterone gel.
Good luck to you, hope you find relief!

SomeonesMom
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 12/15/2017 10:42 PM (GMT -6)   
Just popping in a month after posting to report my daughter continues to do well! Since this time I have heard from a few others who this has helped, some with sjogrens diagnosis and some without. One thing which is clear is that hormones play a huge role in this condition. It is my theory that possibly the sjogrens diagnosis is only evident after a certain degree of damage has already occurred to the glands from the prolonged lack of moisture. An effect, not a cause. I would highly advise anyone suffering with this condition, diagnosis or not, to insist their doctors address and explore their hormone balance. Many docs avoid this because testing accurately is really next to impossible as hormones fluctuate so much.. Medicine is a "practice" after all. The best diagnostic tool you've got is your own body.

Had my daughter accepted the repeated message that this was a 'no cause no cure' situation, she would have continued to suffer and scramble to alleviate symptoms. Meanwhile real damage occurring throughout her body! We never accepted, no matter how often told, that this had no cause or cure, and despite a whole bunch of experienced medical professionals failing to help, we found the solution on our own. And it was as simple as 1+1=2, really makes perfect logical, common sense. There are studies that have proven progesterone cream alleviates dry eye in young women. Should be common knowledge. Here is one:

http://iovs.arvojournals.org/article.aspx?articleid=2382585

More validation: https://www.youtube.com/watch?v=xpwkSJ7Av74

She did have dry mouth/throat as well which is why SS was indicated. But no more. This is working like a charm. Two full months in now. How beautiful it is to see my daughter able to sleep again, able to reclaim her young life, her health on the rebound in a million ways. She even has dental issues resolving themselves.

kiwipismotabby
New Member


Date Joined Mar 2018
Total Posts : 2
   Posted 3/3/2018 2:20 PM (GMT -6)   
Please tell me what strength progesterone you use, how often you use it, and how long it took to work. I've been using 450 twice a day for several days and see no improvement. I'm desperate. Thank you

SomeonesMom
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 3/4/2018 12:40 AM (GMT -6)   
So sorry for your suffering. My daughter had years of agony so I understand the desperation. She is using Progesta-Care cream, one pump a day which is 20mg. (this is formulated to be 480mg per ounce USP ) She simply followed the directions on the bottle. Miraculously, it went to work right away, just a few days and she was 90% improved. Lucky indeed. She had also gone off birth control pills just prior to starting the cream which also could have helped. Quitting the pill before did not have a good effect on it's own, but once she started the cream there was a drastic improvement in moisture. We believe the birth control pills exacerbated the problem, so it is something else to consider.. I've hard from some who the cream has also helped, and others who it didn't. I so wish it could be the solution for everyone. Some recommend much higher dosing, but my daughter is doing well at this standard dose.

Also she uses it 3 weeks daily, and takes one week off. It is important to try and mimic a natural cycle. Progesterone should be very high the last week of the month before your period, then it goes very low during the period. This is when she takes the week off. Just be sure you are using a cream that is all natural..

It's a good idea to consult with a professional with some specialty in hormones, they are very tricky things. My daughter plans to have some testing done soon. Although the dryness has been greatly relieved, her cycles are not so good which is why she had been on the pill before. The regular cycles were great, but the painful dryness just wasn't worth it.

Wish you all the luck in the world of course that you very soon will find relief!

kiwipismotabby
New Member


Date Joined Mar 2018
Total Posts : 2
   Posted 3/10/2018 7:00 PM (GMT -6)   
I wrote you last week, but have not received an answer yet. What strength progesterone cream was used and how often? How long before results? PLEASE RESPOND.

SomeonesMom
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 3/10/2018 7:53 PM (GMT -6)   
kiwipismotabby said...
I wrote you last week, but have not received an answer yet. What strength progesterone cream was used and how often? How long before results? PLEASE RESPOND.


I did reply.. confused it's right there above your 2nd post here. ^^^^ Is it not showing for you?

( Posted 3/3/2018 10:40 PM)
"She is using Progesta-Care cream, one pump a day which is 20mg. (this is formulated to be 480mg per ounce USP ) She simply followed the directions on the bottle."

A few more details you can see in my reply above, but that is the basic answer to your question.
Sorry you are not feeling better yet, hope you will soon!

cilly
Veteran Member


Date Joined Aug 2014
Total Posts : 1510
   Posted 4/27/2018 3:24 AM (GMT -6)   
WHERE can I buy this cream~
Cilly
For our rejoicing is this, the testimony of our conscience, that in simplicity and godly sincerity, not with fleshly wisdom, but by the grace of God, we have had our conversation in the world, and more abundantly to you-ward.

SomeonesMom
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 4/27/2018 10:53 PM (GMT -6)   
cilly said...
WHERE can I buy this cream~


Hi Cilly,

It is pretty easy to find. She picked it up at Whole Foods, I have seen it in other health food stores and they've got it on Amazon too. Any 'natural' progesterone cream will do I think, the brand is probably not too important. Just want to be sure it is all natural and its progesterone only, as there are some creams that contain estrogen too and you don't want that.

It's been many months now and she continues to do well with it.
Hoping you can have success with it as well. Good luck!!

twinSis
New Member


Date Joined May 2018
Total Posts : 4
   Posted 5/14/2018 8:56 AM (GMT -6)   
Hi HappyMom,

I am very glad for you and your daughter that you managed to find a solution for the problem.

Wanted to ask you if before starting the cream she had a Schirmer test done and what values she had. After the cream, did those values improve somehow?

Also, was she having a lack of saliva, or just the feeling that the mouth is dry(from what I've read when there is a hormonal imbalance the consistency of the saliva is changed, but not the quantity/flow).

I am also on the side with a lot of dryness (eyes, no saliva), an inconclusive lip biopsy, and negative blood tests results.

I will like to give it a try to the cream, but need to discuss first with my gyneco cause I am on Visanne treatment for endometriosis and not sure how it interfere.

I am totally on your side that hormone imbalance can create a lot of issues and no one seems capable of taking this connection into consideration.

Thank you for your time.

SomeonesMom
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 5/14/2018 3:12 PM (GMT -6)   
Hi twinsis,

Daughter doesn't recall Shirmer test numbers, thinks in the beginning that it was probably done and the results were very low. Her eye doc just called it Meibomian gland dysfunction (MGD) and focused on scanning those to see if they were atrophied, some were, more as time went on. Those glands were not functioning for years, so I'm sure the Shirmer numbers would reflect that before and after. However, one of her later appointments showed improvement.. glands that they said were atrophied were better, despite being told that was not possible! She was SO dry in the mornings that her eyes and mouth were glued shut. She was completely unable to open her eyes and her tongue was stuck to the roof of her mouth. Until she inserted tears and sipped water she could neither see nor speak. Dry as a bone. Also started suffering from tooth decay due to lack of saliva, despite her keen attention to her dental health. So yeah, it was more than just irritating dry mouth. Far beyond discomfort, there was much pain.

Docs had nothing but to address the symptoms, and not that much brought relief for more than an hour or two at best. All docs insisted it had to be autoimmune, though no testing ever showed any. So glad she found the solution before being subjected to biopsies and yet more inconclusive and exhaustive testing.

Since feeling better she has not been back to the eye doctor at all. No need to, she feels great and has no faith in the doctors or their tests at this point. Her juices are flowing again, do not need a test to prove it.

Visanne I understand is a synthetic progesterone, called progestin. Perhaps your doc would consider a natural progesterone cream instead of an oral synthetic. Progestin messed me up personally some years ago, I ended up with a full hysterectomy. I had multiple issues including endometriosis. I wish then that I had been offered a more natural alternative as the progestin just seemed to make everything worse. As I understand it, all hormone replacement is superior when delivered topically through the skin. I have done massive research over the years on the subject, it is well worth discussing with your doctor.

Because of your endometriosis, I would expect there is a high probability your dryness is hormone related. Hope you'll find relief soon!

twinSis
New Member


Date Joined May 2018
Total Posts : 4
   Posted 5/16/2018 8:44 AM (GMT -6)   
Hi HappyMom,

Thanks for taking the time to answer me.

I think MGD dry eye is different from the dry eye caused by the lack of tears. I have the second one, where my eyes are not producing any tears. I am struggling a lot through the day both with my eyes and my mouth. Because of the dry mouth I get oral trash and so on..

What is interesting is that I had these symptoms 4 years ago, and they lasted for 1 year. AFter this year I had a surgery for endometriosis, and after the surgery all the symptoms vanished and the following 3 years were great. Now, endometriosis came back, and together with it the dry eyes and mouth. Not sure it's a coincidence or not, but wanted to tell this just to sustain your idea that hormonal imbalance could be the culprit for this, event some docs bet it's Sjogren in my case. Not sure of anything...

I was wondering, do you think that if u would have run a hormones test panel you would notice the small value for progesterone?

SomeonesMom
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 5/16/2018 5:16 PM (GMT -6)   
Hey twinsis,

Meibomian glands are a special type of gland located within your eyelids. These glands produce oils that help stabilize the tear film to prevent tears from evaporating from the surface of the eye. There are many causes of dry eye, but the most common cause is Meibomian Gland Dysfunction. You may want to have those looked at if you have not done so.

Now MGD may be a cause or I've wondered if it is an effect of too little tears, that without moisture those glands are unable to remain healthy and functional, so then you end up with not only too little tear production, but also defunct glands, just doubling the difficulties.

What struck me when we discovered this hormone connection, seemed so obvious once I thought about it. Firstly notable is that dry eye is 90% a female problem, men rarely experience severe dry eye unless they have had lasik. So YES hormones seem obvious.

Also what is most compelling is, think about progesterone.. it rises sharply, right at ovulation. This is what makes the body produce moisture, for hanging on to the egg! They are most definitely linked!! No progesterone surge, no moisture.

I keep bugging my daughter to have hormone panel done, which she will hopefully do at some point. However, what I've learned about that, and why docs aren't always too inspired to run them is because they are not entirely conclusive. Our hormone balances change daily, and one test on one day is only going to tell how that one day looks. Not very conclusive, as the next day could show a completely different picture. I've heard that to truly get a complete and accurate hormone panel you would need like 52 tests, like two a day for a month nearly, because even through the day our balances can fluctuate drastically. Still, can't hurt to have a look at one though, just gotta understand that it's limited in scope. I would think the best time to do a hormone panel is when your ovulating to see if progesterone is high like it should be. And if it indicates you need more, really look into topical, natural alternatives. Why use a synthetic chemical when natural is easily available?

Really I think there is nothing more reliable than our own bodies to indicate imbalance. We are all individual too, and often tests numbers do not take into account this. Example my mother has test numbers that indicate 3rd stage liver disease, as well as very high blood pressure, but she has no symptoms of either, none, she is really quite healthy. We all have our unique chemical balances so test numbers aren't always definitive. How you feel and what other symptoms are connected is key.

Don't mean to ramble on. I appreciate you commenting in regards to a likely hormonal connection. I would definitely encourage you fully explore that aspect, as the endometriosis I think is a big clue and should not be disregarded. It can be both a cause and an effect of hormonal imbalance. Really doubtful that your experience indicates coincidence, no way. The dryness appears along with the endometriosis, clearly these are linked! Trust what your body is telling you, it's better than doctors or any tests. I think "auto-immune" is just what they call it when they can't find a cause, and in a case like my daughters and probably yours, it should really be quite obvious. A clear connection of cause and effect.

twinSis
New Member


Date Joined May 2018
Total Posts : 4
   Posted 5/17/2018 8:04 AM (GMT -6)   
Hei HappyMom,

Thanks for the explanations and the nice words. I will try to go onto that direction and see what will happen. I hope it's not Sjogren, but you never know. I will write it here if I reach to a conclusion.

For my eyes I have both...no tears, and no oil smile. This is why I asked about your daughter;s Schirmer test. I was curious if she was only having MGD or also lack of tears.

Meanwhile I am struggling a lot with the dry mouth and dry eyes. I am a programmer, I use the computer 12h/day and sometimes I can not do my work because of my eyes. Has your daughter ever tried Salagen or Evoxac for the dry mouth? Or Restasis for the dry eyes? Not sure how to cope with oral thrush and probably cavities ...

Thanks again

SomeonesMom
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 5/18/2018 1:39 PM (GMT -6)   
hi twinsis

Daughter had a very bad reaction to Evoxac, we almost took her to hospital. Thankfully she was being cautious and only took about 1/3rd of a dose. Had she had a full dose, pretty certain we'd have gone to ER. After that scare she had no interest in trying Salagen. Restasis no, after looking deeper into it and finding alot of negative info, she did not pursue that, and interestingly the eye doc never suggested it. The only drops that would help at all were the Retaine MGD brand, she did have to use them often, but they at least provided some brief relief.

She chased down about every other thing they have to ease symptoms with very little success.
Saw many specialists, took many tests, all to no avail. Tried supplements of all kinds, different diets, you name it. Docs these days seem to only chase after symptoms and do next to nothing to seek the cause. This will not be a popular opinion but I do not believe sjogrens is a cause, I suspect it is simply an effect of prolonged dryness that eventually does damage. I'm pretty sure they would have eventually 'diagnosed' her with it, after a couple more years of inconclusive testing, meanwhile the dryness raging on. We never gave up on seeking the cause and simply refused to accept there was none. Thank god we finally figured it out, no thanks to the medical community. Years of suffering, thousands of dollars on doctors, and the whole time the solution was waiting on the store shelf for $20.

All tests showed a perfectly healthy young woman, and the only thing in her medical history was menstrual issues and indications of PCOS, yet not one doc made the connection??! Not even her endocrinologist she saw multiple times saw fit to run a hormone panel, even after being asked for. It is no secret that hormones and dryness are connected, there are studies going back decades and it is well understood, commonly, that testosterone is effective in menopausal women. And the study I posted previously showing progesterone cream effective for many women's dry eyes. An eye doc that does not look at this angle is negligent in my opinion.

Certainly do anything you can to ease your symptoms, but I would encourage you not to accept that you'll just have to live with this, and continue to pursue the cause. Evidence definitely suggests it is hormone related in your case. I can't see why your doc would be opposed to you trying a natural cream over an oral synthetic. It's your body, and ultimately your call.

Totally feel your pain. My daughters agony was my own, we both lost alot of sleep for years. I hope and pray that you will find relief and soon! Do let us know how it goes.

twinSis
New Member


Date Joined May 2018
Total Posts : 4
   Posted 5/20/2018 8:57 AM (GMT -6)   
Hi HappyMom,

I am so glad for you and your daughter. I know how it is for a parent seeing his child in such a pain and having not much to do. I look at my parents and they are desperate to help me in any possible way.
I also try a lot of supplements, diets, try to have a good oral hygiene, but nothing seems to work for the moment. I am 33 years old and I do not want to take a no for an answer..so for sure I'll do all my efforts to find a reason for what is happening to me.

One more question for you(sorry for wasting so much of your time, I know it takes time to answer to everyone, and I am sure there are a lot of people writing to you), about the lack of saliva. Your daughter had this problem all the time (meaning day and night) or just during the night? For me this is something that happens all day long, I have a burning feeling all day long, my saliva is thick and seems like i can not have a spit.

Sorry again for asking so many questions, I appreciate very much that you take the time to answer me every time.

Thanks again!

SomeonesMom
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 5/20/2018 8:04 PM (GMT -6)   
No problem twinsis, am more than happy to answer any questions. I only want that others can experience the relief my daughter finally did. If someone else can benefit from her experience, there can be something positive to result from all that pain. Everyday I am thankful that her torment is over and she can get on with her life. So wish the same for you, and everyone dealing with this wretched condition.

Her dryness, both eyes and mouth were most extreme at night, the worst when waking in the morning, but it did persist through the day as well, and before she got better her days were worsening rapidly. So yes both day and night in that last year. She complained often that swallowing vitamins was scary because of the dryness in her throat, very hard to wash them down. Swallowing was a struggle. I don't recall her ever mentioining a burning sensation. She has always been a big water drinker which I expect helped her days be more manageable, just constantly gulping water. It's the first thing everyone told her, drink more water, but she always has. Do be sure to hydrate consistently, I'm sure you do. Chewing gum can be helpful, or sour candies.. doesn't solve anything but can assist in producing saliva. She has always loved sour things, and I think that may be why.


Saliva was the first to improve! Within the first couple hours of applying the cream, it was the increase in saliva that she first noticed. Right away she was like.. "wow, not sure if I'm imagining it, but my mouth feels wetter", so that was the very first reaction, but she didn't dare get her hopes up. It was real though, she actually slept through the night for the first time in ages. Morning came and she was dry as usual, but not as painfully so. Within a few days it was clear that this was making a substantial difference as she continued to improve. She had even begun to have dental issues, including painful exposed nerves, that resolved once saliva returned.

Worth mentioning as well is diet. She had begun to notice sometimes after dairy she would have horrendous flare-ups. She kept trying yogurt for the probiotics but it'd backfire big time, generally like 3 days of hell afterward. I do believe that is because dairy products are loaded with hormones, so you might want to see if you feel better without them. It's pretty commonly known that dairy can thicken mucous in alot of people. Eliminating dairy from her diet did not solve her problems, but it clearly worsened them when she ate it.

So very sorry your dealing with this. Hoping you can enjoy the healing my girl has experienced. And soon! People tend to minimize the condition, thinking its just irritation, a little discomfort. They have no idea how debilitating it can become and needs to be taken seriously. No cause, no cure?! Wrong answer! Docs need to approach it with a sense of urgency and make a serious effort to get to the root of it. Don't settle for less.
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